The following lists palliative care research primarily conducted by Australian research groups. The list is based on application of the CareSearch search filter for palliative care to identify articles held within the PubMed database and corresponding to the strongest evidence. Articles have been selected based on relevance and new articles are added on a weekly basis.
Whilst not an exhaustive list, the aim is to keep the community informed by providing a snapshot of recent research findings and planned studies in the Australian setting.
Bennett G, Bates F, Duncanson K, Heslop I, Schneider J, Dineen-Griffin S.
Objectives: Palliative care enhances life, but rural Australia faces significant inequities, and psychosocial distress, an important yet often overlooked aspect, is under-recognized in these settings. This study examines how psychosocial distress evolves in rural palliative patients using the Death and Dying Distress Scale (DADDS).
Methods: A longitudinal study was conducted with palliative care patients in rural hospitals on Australia's east coast. Distress levels were measured using DADDS at multiple timepoints. Mixed-effects models assessed distress trajectories, while survival analyses (Weibull model) examined whether average distress changes predicted survival duration. For comparability, DADDS scores in mixed-effects models were standardized (0-100%), whereas survival analyses used raw total score changes.
Results: Adjusted mean total DADDS was 37.14 ± 22.67, with highest distress in fear of suffering and pain (49.95 ± 26.56) and lowest in fear of sudden death (30.26 ± 30.24). Distress followed a U-shaped trajectory: peaking early (52.68), declining mid (29.85) and late stages (28.26), then rising near death (53.05) (EMMs). Statistically significant changes included declines from early to mid-stage (β = -22.84, p = 0.007) and increases from late to near-death (β = 24.79, p = 0.003). Distress increased most from late to near-death in fear of suffering and death (β = 27.38, p = 0.006) and declined most from early to mid-stage in fear of dying (β = 28.01, p = 0.007). Higher distress correlated with shorter survival; each one-point increase in distress linked to a 6.97% survival reduction (time ratio = 0.930, β = -0.070, p < 0.001).
Significance of results: Psychosocial distress peaks in early palliative care and near death and is associated with reduced survival. Support should prioritize fears of suffering and pain during these stages, address fear of the dying process earlier, and remain attentive to persistent concerns such as loss of time and opportunity.
Bloomer MJ, Butler AE, Brooks LA, Coventry A, McKeever S, Ranse K, et al.
Background: The provision of end-of-life care for children in intensive care is a stressful and traumatic event for parents with immediate and life-long impacts. End-of-life care for children is also challenging for critical care nurses who must balance the child's clinical requirements concurrently with facilitating and supporting the needs of parents and family members.
Research question: What is the research evidence about nurses' and parents' experiences of the provision of end-of-life care in intensive care for children?
Review methods: Following registration with the International Prospective Register of Systematic Reviews, a systematic review was undertaken. A combination of keywords, synonyms, and Medical Subject Headings were used across Cumulative Index for Nursing and Allied Health (CINAHL) Complete, Medline, and APA PsycInfo databases. Papers were independently assessed against inclusion and exclusion criteria. Included papers were assessed for quality. Narrative synthesis was used to analyse and present the findings.
Findings: From 40,904 records screened, 55 research publications were included, representing the perspectives of nurses, mothers, fathers, extended family, and legal guardians. Narrative synthesis revealed seven themes identified from the nurse and parent experiences: (i) communication; (ii) end-of-life decision-making; (iii) suffering; (iv) preparing for death; (v) at the end of life; (vi) after death; and (vii) nurse impacts. While there was mostly concordance between nurse and parent experiences, there was some discord between parents' communication needs and nurses' understanding of their role in communication. This review also highlighted how nurses commit to supporting parents in their grief and bereavement while concurrently managing their own emotions in response to a child's death.
Conclusion: A child's death cannot always be prevented. By exploring nurses' and parents' experiences of end-of-life care, as they occur simultaneously and in parallel, it is possible to build understanding and evolve practices to improve the experience of end-of-life care for children for all involved.
de Freitas M, Roberts L, Cockroft A, Duke G.
Objective: Evaluate the quality of documentation and delivery of EOLC in the Intensive Care Unit (ICU) during the COVID-19 pandemic and compare with a pre-pandemic audit.
Design: Retrospective clinical audit of medical records of patients who died in ICU during the COVID-19 pandemic, January 2021 to February 2022, using the Documentation and Evaluation of Care of Dying Equation (DECODE) survey tool.
Setting: Three metropolitan adult ICUs in Victoria, Australia.
Main outcomes: DECODE audit score, patient characteristics, demographics, end of life planning, quality of death indicators, management of dying.
Results: There were 194 deaths over a 14-month period. 2 cases were excluded. Patients wishes were documented in 83 (43%) cases. A total of 175 patients (91%) were receiving active treatment 24 h before death. A total of 166 deaths (86%) were expected and occurred a mean of 4.5 (IQR 2-9) days from admission to ICU. A total of 52 (27%) had palliative or symptom control care plans. The median DECODE score was 14 (IQR 12-15) with statistical variation across the three sites (p=0.001). Compared to pre pandemic audits, the DECODE score was higher (p=0.001) despite pandemic restrictions.
Conclusion: EOLC in ICU remains challenging due to diagnostic dilemmas, prognostic uncertainty, and short time-frames. Assessment of quality of EoLC care helps assess and possibly improve provision of care. The DECODE questionnaire provides a semi-objective measure of quality of care provided to the dying patient in ICU.
Guo J, Dai Y, Chen F, Liu C, Jiang S, Hu Y, et al.
Background: Digital health (DH) provides a valuable opportunity for accessible and efficient palliative care delivery. In recent years, an expanding body of systematic reviews and meta-analyses has examined DH-based interventions in palliative care. However, their conclusions regarding effects remain inconsistent, often constrained by methodological limitations and the variable quality of primary studies, making it difficult to form a coherent appraisal.
Objective: This umbrella review aimed to examine, appraise, and synthesize previous systematic reviews and evaluate the role of DH-based services on palliative care, and to identify barriers to using DH-based services in these settings.
Methods: Systematic reviews with or without meta-analysis focusing on DH within palliative care settings were considered eligible. Seven electronic databases, including PubMed, Web of Science, Embase, Cochrane Library, CNKI, Wangfang, and VIP, were searched for eligible studies published from inception to April 2024. The inclusion criteria were identified based on the principles of the PICOS (Population, Intervention, Comparison, Outcomes, and Study Type) framework. Two reviewers independently screened records and extracted data. Eligible studies were appraised for methodological quality using the JBI (Joanna Briggs Institute) Critical Appraisal Checklist for Systematic Reviews and Research Syntheses. A narrative synthesis, supported by tabulated summaries of the results, was used in this umbrella review.
Results: A total of 25 systematic reviews (4 with meta-analyses) published between 2012 and 2024 met our inclusion criteria, most of which were evaluated as moderate quality. Reported outcomes ranged from symptom management effectiveness to psycho-social burden (ie, mood, distress, and emotional well-being), quality of life, caregiver burden, decision-making, cost-effectiveness, communication, self-efficacy and self-management efficacy, resource use, family empowerment, and acceptability. The effect of DH-based interventions for palliative care was basically consistent, with all included reviews reporting either significant improvements or noninferiority of DH-based interventions as compared to usual care. Technical challenges, organizational factors, ethical concerns, resource constraints, nonverbal communication, and perceptions were considered as barriers to the use of DH-based services.
Conclusions: Across included reviews, DH was found to be beneficial or noninferior to standard care, with no reported adverse effects, supporting its safety and feasibility as a mode of service delivery. To ensure successful implementation and long-term sustainability, a multifaceted strategy is needed that integrates technological enhancements and training, organizational commitment, ethical safeguards, infrastructure development, and equitable access.
Lee KKH, Johns A, Lee W, Penm J.
Background: Adjunct methadone has been used previously for cancer-related pain, but evidence on predictors for early response remains limited.
Objective: Identify the prevalence and predictors of early adjunct methadone response in palliative care patients.
Design: Retrospective cohort study.
Settings/ Subjects: Patients who initiated adjunct methadone from 2022 to 2024.
Measurement: Univariate and multivariate Poisson regression identified prevalence and predictors of early response.
Results: Among 42 patients, 28 (67%) achieved early response. They had higher baseline oral morphine equivalents, higher starting methadone doses, and shorter days to first titration (p < 0.05). Predictors included metastatic cancer (RR 3.30, p = 0.005), higher performance status (RR 2.58, p = 0.033), methadone daily dose >5 mg (RR 3.91, p = 0.013), lower baseline pain scores (RR 0.78, p = 0.025), and preserved liver function (RR 4.32, p = 0.009).
Conclusions: Metastatic cancer patients with high performance status without liver damage may benefit from a higher, proactively titrated starting dose of adjunct methadone.
Last updated 30 April 2024